What do you think about genetically engineered people?

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But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

I realize you're playing devil's advocate, but this is the exact kind of reasoning that would lead us experimenting on humans who don't consent. I mean, if a few people have to "fail" in order to cure cancer, that too would be a "greater good."

At least as of right now, there is a generally shared consensus that it doesn't matter how many people it may eventually benefit -- using humans for research purposes is wrong (without their informed consent).

These girls didn't get a chance to provide it. They were betrayed by the two people who -- arguably -- have more of an obligation to protect them and their interests than any other people on earth. It's hard to think of this without emotions getting involved (for me, anyway). The very nature of who they are was changed, by technology that we still don't have a great grasp on (in terms on controlling the impact and scope of the genetic changes), and it was done for such a relatively trivial reason. The ability to contract HIV isn't a death sentence, it's something many people on earth share. Many of us manage it by reducing our risk factors for exposure, people who have a higher risk of exposure can choose to take preventative drugs. Even for those of us who are exposed and become HIV Positive, it's not an automatic death sentence. People can have quite good long term outcomes.

Thank you for the response. I always appreciate your posts and how you handle yourself in debates (even when there is nothing to debate, lol).

Let me start by saying I have no background in science. I never even played a scientist on TV. But I do like, no... love to think differently and to push how I think/view/judge things. That's why I love this forum, but also why I sometimes get in over my head here. I tend to be a little more philosophical than scientific...

OK, so with that out of the way...

We make decisions for those who can't consent all the time. We weigh the risks vs the benefits and make decisions we think are in their best interest. The obvious differences (obvious to me, at least) here are (1) the risks and rewards are far less certain, and (2) we aren't making decisions in the best interest of the individual, but rather future individuals, hopefully for society as a whole. So ultimately, it's a moral question, not a scientific question, right? Where do you draw the line for your family? Sure, there are societal ethics and laws in place that come into the conversation (I assume this is what you mean by a generally shared consensus), but those are somewhat arbitrary and subject to change over time, right?

I'm thinking about it a bit more conceptually. If there were significant and substantial indications that human testing could lead to immunity of certain diseases, would that human testing be worth it? Clearly there are a lot of details that would need to be filled in to have that conversation (IMO, maybe it's just a blanket "no" for some, which is fine)... but for me, there is a conversation to be had there.

I also think the point someone brought up about disease/virus mutation plays a very significant role in all of this, too.

I can imagine a time when technology is considered reliable enough to make it potentially ethical to alter genes prior to birth, especially when it is being used to address more significant harms. I mean, there are people who are born with serious conditions, including some that make it impossible for their lives to continue. In these cases, I think there is a better case to be made that genetic alteration could be worth it. I don't think resistance to HIV even approaches that level of importance, so that is influencing my response.

You're right that it's a moral question, it just involves science in this instance. Our consensus can change over time and it probably will as the technology continues to emerge. The pushback we're seeing to this case is demonstrating how far ahead of the current consensus this action was.

And while it's unlikely that this is going to lead to anything terrible for other people, I think there is also some anger and frustration because it could. We don't really know what else may have changed for these girls genetically or what will happen if they ever choose to have children. This scientist doesn't seem to have considered his obligations to help minimize risk for everyone else when he decided to do this and that it's for such a relatively minor change is the part that is really inexcusable to me.

For me, human testing against the will of the subject (or without informed consent) would always be ethically off limits, especially when it involves the potential for harm (which I think virtually all testing would). I can't assume autonomy over someone's body. Why would they matter less than the people who would be helped by the testing? I'm not saying we shouldn't have the conversation (I think we're better off, in fact, when we discuss things like this even if better to understand why we oppose them), but I am finding it hard to imagine an argument that would change my mind on this. Of course, I'm open to hearing from people who do think it would be worth it.

I would just say that this is not surprising.
In the history of humanity, we have never had a technology that we chose not to use.
Why would this be any different?
It is being developed for the specific and obvious reason that it can be used in humans and somebody had to be first.
I remember when the discussion was about human cloning. All the scientists came out and said: "It's too early." They said it was not ethical and might never be. Scientific organizations issued statements saying that the science was extremely young and that no one should even think about human cloning. They said to do so would be incredibly irresponsible. They said, "Trust us! We're scientists! Our community would never do such a thing."
The European Convention on Human Rights and Biomedicine even issued a ban on human cloning, and the UN issued a declaration supporting an international ban.
And, I think it was the very next day after that happened, an Italian scientist raised his hand and said: "Hey, I'll do it. If someone pays me enough. If it is illegal, I'll go out in international waters -- beyond the laws -- and do it."
I am not saying I condone this, or that anyone can condone. It actually scares the bejeezus out of me.
But it is pretty naive to say: "This guy was out of line! He never should have done it!"
This DNA stuff is so complicated and complex that there was going to be a leap when someone did it for the first time anyway. And somebody was going to do it eventually.
If not, why study it?

But what about the greater good? It's the "gotta break a few eggs it you want to make a cake" cliche, right? If a few/several/lots of test kids have to fail in order to produce generations of people that are immune to cancer, epilepsy, Parkinson's, Alzheimer's, etc... is it worth it?

Mostly playing devil's advocate here...

I realize you're playing devil's advocate, but this is the exact kind of reasoning that would lead us experimenting on humans who don't consent. I mean, if a few people have to "fail" in order to cure cancer, that too would be a "greater good."

At least as of right now, there is a generally shared consensus that it doesn't matter how many people it may eventually benefit -- using humans for research purposes is wrong (without their informed consent).

These girls didn't get a chance to provide it. They were betrayed by the two people who -- arguably -- have more of an obligation to protect them and their interests than any other people on earth. It's hard to think of this without emotions getting involved (for me, anyway). The very nature of who they are was changed, by technology that we still don't have a great grasp on (in terms on controlling the impact and scope of the genetic changes), and it was done for such a relatively trivial reason. The ability to contract HIV isn't a death sentence, it's something many people on earth share. Many of us manage it by reducing our risk factors for exposure, people who have a higher risk of exposure can choose to take preventative drugs. Even for those of us who are exposed and become HIV Positive, it's not an automatic death sentence. People can have quite good long term outcomes.

Thank you for the response. I always appreciate your posts and how you handle yourself in debates (even when there is nothing to debate, lol).

Let me start by saying I have no background in science. I never even played a scientist on TV. But I do like, no... love to think differently and to push how I think/view/judge things. That's why I love this forum, but also why I sometimes get in over my head here. I tend to be a little more philosophical than scientific...

OK, so with that out of the way...

We make decisions for those who can't consent all the time. We weigh the risks vs the benefits and make decisions we think are in their best interest. The obvious differences (obvious to me, at least) here are (1) the risks and rewards are far less certain, and (2) we aren't making decisions in the best interest of the individual, but rather future individuals, hopefully for society as a whole. So ultimately, it's a moral question, not a scientific question, right? Where do you draw the line for your family? Sure, there are societal ethics and laws in place that come into the conversation (I assume this is what you mean by a generally shared consensus), but those are somewhat arbitrary and subject to change over time, right?

I'm thinking about it a bit more conceptually. If there were significant and substantial indications that human testing could lead to immunity of certain diseases, would that human testing be worth it? Clearly there are a lot of details that would need to be filled in to have that conversation (IMO, maybe it's just a blanket "no" for some, which is fine)... but for me, there is a conversation to be had there.

I also think the point someone brought up about disease/virus mutation plays a very significant role in all of this, too.

And I second the above as a person that has had to make decisions in the best interests of someone who can’t for decades. You have to weigh up what’s in the best interests of each individual.

I'm all for punching whatever God you believe in firmly in the face but the cost & equality in availability in such technology is what is really debatable. Just another way of widening the already large gap between the "haves" from the "have nots". Not to mention, survival of the fittest is now turning into survival of the richest; I'm sure Darwin is spinning in his grave

I don't believe he actually did what he said he did. As far as I've read nobody's actually validated his claims so until they do I'm calling #fakenews.

ETA: targeting HIV positive parents is a weird choice as well. My understanding is that HIV positive folks can use prophylactic drugs to have unprotected sex without transmitting the virus and they are very effective. Is this not an option for conceiving couples for some reason?

Yes, the sad reality is, MDs are encouraged to cater to peoples' choice of life for something that is completely preventable without use of drugs (><). More commonly used in instances of blood borne pathogen exposure though vs. say swingers

Note: "vertical transmission" of passing HIV from mother to child is already treatable with drugs with zidovudine & nevirapine; not so with specific CCR5-tropic virus drug (maraviroc)

While, in theory, it is technology that could rid the world of a whole host of genetic diseases....

It's such a slippery slope...we don't know the long-term effects of these modifications. It has the potential to be used for the creation of "designer babies". In case you want a blond-haired, blue-eyed little girl.

I wonder if the same people who buy non-GMO popcorn and such would be okay with a genetically modified baby?

That doesn't make any sense. You're asking if people who are against a thing with characteristic X would be OK with something with characteristic X squared and cubed? Why would you think they would be? If I prefer native plants to a manicured, fertilized, irrigated lawn on my quarter-acre lot, would you think that I should suddenly want to cut down all the trees and bring in lawn sod if I moved to a house in the country that was on four or five acres?

Interestingly, the scientist who ran this experiment has not yet made public how he chose his subjects and how much these people actually understood what they were doing. It's unfortunately quite possible they didn't. And he was strongly urged by peers not to do it, as if it goes wrong it could set back support for the whole niche in the court of public opinion.

In my mind, the ethics of what he says he's done are impossible to overcome, because you are experimenting on someone who cannot agree or decline. The babies and their possible offspring will pay the price if there are negative consequences. It sounds to me like the consensus is that the process has not been vetted enough in the lab to be moved to human trial yet.

Even if it gets to the point where it is deemed safe, it still has such a profound possibility of being misused, it's hard for me to think past that. Perhaps that's what most people worry whenever we move in such a new scientific/medical direction though. I'm sure that was the fear with test tube babies and IVF as well.

It is generally medically accepted that parents choose for children until they are old enough to understand and be autonomous (parent get to choose to vaccinate or not, circumcise or not,.....). Its difficult because there are things (arguably) necessary that need to be done before a child is old enough to make an informed decision.

It seems like the real line gets drawn in reacting to what is (most people aren't going to argue with a parent seeking treatment for an existing condition in their child) and what could be (vaccines anyone?).

True, thanks for adding that. IMHO parents choosing between different medical options makes sense, at least when it only affects their children (ie not vaccines ). Parents choosing to allow their babies to be used in an experiment for an as yet unapproved treatment is different. But that's just me, at least. Regardless, I think that makes it even more important that he prove the parents were adequately educated on the risks and other options and understood.

It's my understanding that these babies DNA has been edited. Meaning that when they have children of their own, those children will inherit this edit, too.

I know that isn't what you meant, but it's another complication in an already complicated situation.

I'm not going to invoke Godwin's Law here, but it sounds like the first step toward creating the Master Race.

I guess I have to ask, do you think humans would ever agree on what a master race really is? I could see a few master races being created, then they all try to kill each other and be the best and whatever, and everything changed, but in some ways nothing really did. We already do that anyways....

It is a nuanced issue. Genetic engineering is a tool, nothing more nothing less. Like any tool, people can use it to great effect and benefit or they can use it to harm or they can just use it ineptly. So first off I want to say I am in no way against "genetic engineering" because that would be like being against hammers. I'm against misuse of genetic engineering kind of like I would be against someone using a hammer as a blunt force weapon.

In this particular case I think this scientist is rushing something not sufficiently tested into human testing for the sake of a spotlight or a "first" and that is unethical. That is not a condemnation of the tech itself nor its potential future use in humans.

Now, as to the larger issue of genetic engineering being used in humans I think it is also nuanced, there are plenty of things where I think it would be a clearly beneficial and valued approach to take, others where it is more gray and others where it is unethical.

As an example I think using a genetic engineering tool to fix a genetic defect such as the cause of cystic fibrosis identified during early stage genetic screening of infants (should we reach that capability in the future) would be a pretty clear win. "Fixing" genetic issues such as dwarfism or blindness however might be met with some warranted hostility from communities of people that do not see that as a defect to be fixed so much as an alternate way of being in this world. Then you have your potential uses for "designer" babies for just whatever eye color etc etc you may want. There I would say if the risk of the treatment is non-zero that such an application would be unethical and even if it was zero it would still be questionable.

All of those use-cases are hypotheticals though. The tech could be used now, in theory, to engineer an egg used for IVF in a way that would affect the development of the fetus but I don't think it is there yet as a tech to actually change an already developed human being.

Also there is the important ethical distinction between somatic treatments and germ-line treatments. I think in the case of elected consented somatic treatment then it should be treated like any other treatment. When you get to something that affects the germ-line though I think that does take it to a different level of discussion.